Oh so silent blog

I know I have sent a couple of alarm bells ringing with my lack of blog posts the past few days. So am just updating to say I am still here.

There are some things that when I just don't want to blog about. Too hideous. Too private. Suffice to say I am getting lots of good care and things are slowly improving. Ironically it is the side effects of a tablet to reduce the side effects of the chemo that have caused so much drama.

People are being very kind. Jonny is well fed, which is such a blessing. To not to even have to think what he may have for dinner each night. If only I could join in the eatng more. The food looks good just no tum for it. Very basic diet for me right now.

I have offers of people to come and sit with me. They keep saying they don't mind how I am. The trouble is that I mind. It bothers me.

I know I need to get over myself but it is a step at a time. This is happening to me. And it is for me to know what is right and helpful and what isn't.

Change of scene day

So I had my change of scene day today. It's been a week with mainly these four walls of this home. I love my home but it was time for a change today. It was lovely. My friend has more womens magazines than a newsagent so made a good stab at catching up on trends and celebrity in between naps in the morning.

I then ate a whole jacket potato with tuna on it for lunch. I realise that is NO big deal in any one else's world but to me it is a big deal. HUGE. I am starting to eat properly again. Yey.

My afternoon was then a reflexology treatment in the snug as a bug room, and then moved myself onto the spare bed for some afternoon nap time.

I am learning that saying yes to help is sometimes a very good thing.

Sleepy Head

I have spent most of today asleep. Can't really remember anything else or what I did yesterday.

We have had lots of nursing support which has been great. Had no idea it was available. But have had two phone calls from the community matrons today as well as the visit from the my hospice nurse, I mean Ann, yesterday. So having felt very lost at weekends and generally a few weeks ago, we do feel a lot more supported. And we are very grateful.

In my waking hours this evening I am alarmed by the amount of rugby on the TV. I have done well over the years to learn about football I think. But rugby I struggle. I know that won't be a popular call but just the way I am.

How long until Wimbledon is on until I can get my own back?

Well fed

Yesterday I started eating properly again. I had a very frustrating mid week experience where I wanted to eat more than just toast but my stomach was really struggling to take it in. Last night someone made us fish pie. It hit the spot.

Whilst I have been FED UP, the other member of our household has been very WELL FED all week. We have been so touched by the kindness of the church community who are reaching out with love at this time. For over a week we had Jonny's evening meals delivered for him and this has been a huge help. There have been pangs of guilt. You may have got by now I struggle with accepting help. But goodness. The boy has eaten well.

Obviously this illness doesn't just affect me. On our wedding day we had a phrase from dove poem which read "two parts of a loving whole, two hearts and a single soul." And whilst I am camped out in chemo land at home, the other part of us is working 12 hour days, coming home to try and look after me, as well as dealing with his own emotional fears I know. So having a good proper meal sorted has REALLY helped.

So we say thank you. Thank you. And thank you again.

Tonight we will be eating in Pizza Express. And that feels like a massive treat of a different kind too.

Belonging

One of my experiences of the past few days has been letting local hospice care help me at home. This has been hard. Emotionally. It's that word. Hospice. Is that where I am? Is that what I need? How can this be?

It turns out that this is Ann's job though. To visit people like me who are dealing with side effects and symptoms at home. And she was really helpful. She just got it on many levels.

I had been putting a lot on myself about how badly I have been coping recently. Whilst the reasons were not what I wanted to hear, to have someone who knows there stuff tell you it is not you, it is your body and everything you are going through, gave me some acceptance that it is not just me. I'm really sick. And that isn't my fault. So we are pleased and so grateful for this help. Even if it is a hard one to accept.

She left some leaflets on the coffee table. Some of which were hard to read even the title of. She also mentioned the day hospice. I am sure for some who are isolated and alone these are a real life line. But for me, right now, I'm not sure. You see I have tried various cancer support places before and it turns out I don't really fit in there either. Why not? Well one reason is my age. Believe it or not I can find myself in a situation were the staff and other visitors all treat me like some sort of "weird special case" because I have this dreadful disease at such a young age. So I end up feeling like I don't fit in the one place where in theory I should. But I don't think it is just my age. I know of others in my situation who that kind of thing is not for them. That's not to say that this support is wonderful for many. And maybe I will change. But right now - it is not a place I feel I belong.

For me this disease takes over enough. And I long to be free of it. And when I feel well enough (which is not that frequently right now) I want to see those friends and family I trust. Who I know just see Jo and not the cancer.

I believe most of us yearn to belong, wherever we are in life. For me, heartbreakingly, doors have been closed. But that is not to say I don't belong anywhere. There are special people and places and moments where I totally do. Not defined by illness or labels or what I look like or whatever. A level beyond any of those temporary things that seek to destroy my human spirit.

Where I do belong.

Difficult Lessons - Accepting Help

In life I am naturally happier being the one who is rushing around after other people. What I am not very good at is being on the receiving end of help. I don't say this as a martyr - I just find it hard to let other people do things for me. Since I went to university when I was 18 years old, I have pretty well looked after myself. And for a long time my Jonny too. So, maybe I am just used to being that way.

This leaves me in a tricky situation right now. Because I am not well. And no matter how much I want to be keeping everything together and do everything, my body just isn't up to it at the moment. My achievements of Monday morning, in between two sleeps, were to empty the dishwasher and hang the clothes up to dry. These things are not big tasks. When I am feeling well - they just happen. And on bad chemo days it is more of an achievement to walk up the stairs than anything else.

I really DON'T want to be like this. That may sound obvious but it is so frustrating to not even able to think about what we are going to have for dinner. Let alone struggle to cope with symptoms and side effects of drugs.

I have, however, been offered help. By both the hospital and the community. I took some talking into accepting this, but I guess I am in a place where I know I need help. And so I knew when it was offered it was something I should take. Stubbornness can lead to cutting off your nose to spite your face. And my desire is always to make this bad situation better, not worse.

So. I have my next chemo tomorrow and for the next eight days starting tomorrow, my church will be delivering evening meals to our home. For the first few days these will just be for Jon as my stomach has been so bad. Believe me this wasn't something I accepted just like that. But in reality it is going to be a huge help. I have done this for others in the church when they have not been well, or had babies etc. It's just hard to accept such kindness from the other side.

The second piece of help I have accepted is nursing care at home to help me to cope with the side effects and symptoms. Whilst this is a good thing, again I took some persuasion. How ill do you have to be before this is deemed necessary? I certainly don't want to be ill enough. But maybe I am. Otherwise this wouldn't be offered to me. I found it particularly hard that these nurses are coming from the local hospice. Emotionally hard. I am sure they will be lovely. Just so don't want to be in the place I am.

So the next few days should be better than last time as I accept this help. Just because a lesson is difficult that doesn't mean it is not worth learning or when you do it won't make life better or easier. And I can see the bigger picture here. Someone (who happens to be me) is not well. And there are things than can be done to help. That someone is letting help in.

We just seem to have got to this place mighty quickly. So I've had a steep learning curve. But this is where I am. Even though I don't want to be. I just am. And I am incredibly grateful for the help I receive.